A systematic review of administrative and clinical databases of infants admitted to neonatal units

Abstract

Objectives: High quality information, increasingly captured in clinical databases, is a useful resource for evaluating and improving newborn care. We conducted a systematic review to identify neonatal databases, and define their characteristics. Methods We followed a preregistered protocol using MesH terms to search MEDLINE, EMBASE, CINAHL, Web of Science and OVID Maternity and Infant Care Databases for articles identifying patient level databases covering more than one neonatal unit. Full-text articles were reviewed and information extracted on geographic coverage, criteria for inclusion, data source, and maternal and infant characteristics. Results We identified 82 databases from 2,037 publications. Of the country specific databases there were 39 regional and 39 national. Sixty databases restricted entries to neonatal unit admissions by birth characteristic or insurance cover; 22 had no restrictions. Data were captured specifically for 53 databases; 21 administrative sources; 8 clinical sources. Two clinical databases hold the largest range of data on patient characteristics, USA’s Pediatrix BabySteps Clinical Data Warehouse and UK’s National Neonatal Research Database. Conclusion A number of neonatal databases exist that have potential to contribute to evaluating neonatal care. The majority are created by entering data specifically for the database, duplicating information likely already captured in other administrative and clinical patient records. This repetitive data entry represents an unnecessary burden in an environment where electronic patient records are increasingly used. Standardisation of data items is necessary to facilitate linkage within and between countries.